🚀 go-pugleaf

On Apr 5, 8:03 am, "M" <d...@touch.me> wrote:
> My fiancé got sick at the end of December 2005. We thought she had the flu.
> After
> six days she started feeling better, but her headache got worse. She
> described it as feeling like cold water was running over her head as if she
> was in the shower, except the cold water was 'rivulets' of pain'. The pain
> went from her forehead, across her scalp down to the base of the back of her
> neck. The pain is constant - everyday. Better in the morning and getting
> worse by evening. Mid-January she got a stiff neck so bad I had to follow
> her home from work to make sure she would be OK. The stiff neck went away,
> but the headache grew even worse. A friend of hers at a clinic asked her to
> follow her fingers with her eyes and she could not do it. She did not even
> realize that she was not moving her eyes. By February it became so bad I
> took her to the ER. They ran blood tests, MRI and LP. Everything was
> 'normal' and the doctor suggested a neurologist because he did the 'follow
> my finger' thing and she told him she was even though it was clear to us
> that she was not. So we found a neurologist and he looked at her MRI and
> said there was nothing wrong with her and told her to come back in a month
> if she still felt bad. He gave her Valium and sent her on her way. Valium
> did not begin to help her headache, but she dealt with it the best she
> could. On March 8 she lost her peripheral vision. On the 9th she started
> having trouble swallowing, on the 10th she lost her facial muscles - she
> could not smile, stick out her tongue or suck on a straw. I took her to the
> ER again and she was having difficulty walking and her right eye was getting
> droopy. They gave her Imatrex and she thought her head was going to
> explode - it had the opposite effect on her. By the next day she threw up
> for 8 hours, lost her ability to speak and had to write me notes to
> communicate. After about two hours she could not open her eyes at all. She
> was able to open her eyes and speak again about five hours later. She still
> had her other symptoms that seemed to get worse as the day went on. She was
> released from the hospital on the 15th with no diagnosis, even though they
> ran every test they could think of. She suffered for two days at home and I
> took her back to the hospital again on the 17th. They put her in ICU for
> four days with more blood/urine tests, MRI, CAT, LP etc. They tested for
> myasthenia gravis, multiple sclerosis, guillian-barre, lyme's, encephalitis
> and a ton of other things I can't pronounce - all results were negative.
> They released her on the 22nd because the insurance company said 'diagnose
> her or let her go'. Before she left she still had many tests that were
> pending. Her neurologist suggested she might be depressed. That really upset
> her because she has other things to do than hang out in the hospital. Her
> hospital doctor said the neurologist was just at a loss as to the cause so
> he blamed it on her. A few days later the hospital doctor called and told
> her she had Rickettsia. She took the lab results to her PCP and he told her
> no test for Rickettsia was ever done. Her endocrinologist said everything
> was normal and suggested yet another neurologist. We sent the MRI's to a
> neurosurgeon and said he found nothing out of the ordinary. Now we don't
> know who or what to believe. She can deal with any diagnosis, but not
> knowing is almost as hard to live with as her headache. It is not a
> migraine, tension, cluster etc. Her head gets so cold that she will wear a
> cap on a warm day. She has trouble walking almost every other day. Her legs
> just won't work and sometimes she can't even feel them. We're running out of
> ideas about where to turn for answers - no one with a degree in medicine is
> managing her case. I have done a billions searches for these symptoms and
> even though she has a few, not one disease fits them all. If anyone knows
> how I can solve this please help. Thank you.

Wow this is very scary!  All of those medical people and no answers.
It is obvious something is going on.  I am disappointed in the medical
professionals that labeled it depression.  The excuse for I don't know
and to stupid to figure it out.  Maybe this is viral and or autoimmune
like Lupus.  I am not a medical person, but I will keep you in my
prayers and keep us updated as to what you find out.  I just wanted to
let you know you are not alone out there and we are here for you.

On Apr 5, 10:03 am, "M" <d...@touch.me> wrote:
> My fiancé got sick at the end of December 2005. We thought she had the flu.
> After
> six days she started feeling better, but her headache got worse. She
> described it as feeling like cold water was running over her head as if she
> was in the shower, except the cold water was 'rivulets' of pain'. The pain
> went from her forehead, across her scalp down to the base of the back of her
> neck. The pain is constant - everyday. Better in the morning and getting
> worse by evening. Mid-January she got a stiff neck so bad I had to follow
> her home from work to make sure she would be OK. The stiff neck went away,
> but the headache grew even worse. A friend of hers at a clinic asked her to
> follow her fingers with her eyes and she could not do it. She did not even
> realize that she was not moving her eyes. By February it became so bad I
> took her to the ER. They ran blood tests, MRI and LP. Everything was
> 'normal' and the doctor suggested a neurologist because he did the 'follow
> my finger' thing and she told him she was even though it was clear to us
> that she was not. So we found a neurologist and he looked at her MRI and
> said there was nothing wrong with her and told her to come back in a month
> if she still felt bad. He gave her Valium and sent her on her way. Valium
> did not begin to help her headache, but she dealt with it the best she
> could. On March 8 she lost her peripheral vision. On the 9th she started
> having trouble swallowing, on the 10th she lost her facial muscles - she
> could not smile, stick out her tongue or suck on a straw. I took her to the
> ER again and she was having difficulty walking and her right eye was getting
> droopy. They gave her Imatrex and she thought her head was going to
> explode - it had the opposite effect on her. By the next day she threw up
> for 8 hours, lost her ability to speak and had to write me notes to
> communicate. After about two hours she could not open her eyes at all. She
> was able to open her eyes and speak again about five hours later. She still
> had her other symptoms that seemed to get worse as the day went on. She was
> released from the hospital on the 15th with no diagnosis, even though they
> ran every test they could think of. She suffered for two days at home and I
> took her back to the hospital again on the 17th. They put her in ICU for
> four days with more blood/urine tests, MRI, CAT, LP etc. They tested for
> myasthenia gravis, multiple sclerosis, guillian-barre, lyme's, encephalitis
> and a ton of other things I can't pronounce - all results were negative.
> They released her on the 22nd because the insurance company said 'diagnose
> her or let her go'. Before she left she still had many tests that were
> pending. Her neurologist suggested she might be depressed. That really upset
> her because she has other things to do than hang out in the hospital. Her
> hospital doctor said the neurologist was just at a loss as to the cause so
> he blamed it on her. A few days later the hospital doctor called and told
> her she had Rickettsia. She took the lab results to her PCP and he told her
> no test for Rickettsia was ever done. Her endocrinologist said everything
> was normal and suggested yet another neurologist. We sent the MRI's to a
> neurosurgeon and said he found nothing out of the ordinary. Now we don't
> know who or what to believe. She can deal with any diagnosis, but not
> knowing is almost as hard to live with as her headache. It is not a
> migraine, tension, cluster etc. Her head gets so cold that she will wear a
> cap on a warm day. She has trouble walking almost every other day. Her legs
> just won't work and sometimes she can't even feel them. We're running out of
> ideas about where to turn for answers - no one with a degree in medicine is
> managing her case. I have done a billions searches for these symptoms and
> even though she has a few, not one disease fits them all. If anyone knows
> how I can solve this please help. Thank you.

WOW! I wish I had an answer but I dont! I had to comment on all your/
her suffering tho. Just utterly terrible. May I pray for her to get a
diagnosis at least! Im so sorry, may things improve!

Dear M,

Wow! When you started I was thinking muscular issues, since the neck was 
involved as well. I don't honestly know whether to tell you to totally write 
off the neurological stuff or not. There's so much involved, it's hard to 
know where to begin, muchless end.
You say several times that the pain is kind of icy cold. I know it's a lame 
question, but I gotta ask anyhow, does heat, preferably moist heat, give her 
any relief at all? Did you or her ever get a chance to actually see any 
radiological (xray, MRI or CAT) reports? I'd get my hands on all that and 
try and make sense of it. Everyone has spinal defects, but they often 
overlook them as the cause of the pain because of that. If she got a nerve 
impingement that showed up on any scans, the radiologist should have called 
it, but the doctor may have given it a pass.
I want to be sure and let you know I am just grasping at straws here, but 
could she say it's comparable to a "slurpee brain freeze" type of pain? That 
should be a slam dunk for a doc as I believe that's an esophogicial 
reaction/reflex.
Forgive my jumping all over the place, I'mjust writing as this stuff pops in 
to my head. Don't be so fast to blow off the idea of depression treatment. 
She's has to be feeling low after looking for an answer for two years. I'd 
bet she sleeps like crap, so CFS is expected when you get 2 hours of busted 
up sleep a night, that's on a good night.
In spite of the "who knows" Rickettsia diagnosis, did they run a course of 
tetracycline through her to see if that helped? Couldn't hurt unless she's 
got issues with the drug. Some of the symptoms point that way, but not 
enough for a sure call. But on the other hand, the better in the morning 
then going downhill throughout the day could very well be a spinal issue and 
the trapping of a nerve, as we shrink from gravity throughout the day, 
compressing disks.
Take a nice slow run through her tests results. Something may pop out at 
you. Rocky Mountain Spotted fever and Lyme could still be a possibility, 
they are both pretty tough to diagnose on the first shot. You may want to 
have them run bloodwork again for those two. Grill her good on having picked 
up a tick someplace.
I wish I could help more, but you may just end up doing diagnosis by process 
of elimination, which is always the long way around. Any more info is always 
helpful. Keep coming back in here. We have to do something to nail this down 
to at least an educated guess. The sooner the better.

Keep in touch--og




"M" <dont@touch.me> wrote in message 
news:m8KdnUSn6fjEn4jbnZ2dnUVZ_uuqnZ2d@gvtc.com...
> My fianc� got sick at the end of December 2005. We thought she had the 
> flu. After
> six days she started feeling better, but her headache got worse. She
> described it as feeling like cold water was running over her head as if 
> she
> was in the shower, except the cold water was 'rivulets' of pain'. The pain
> went from her forehead, across her scalp down to the base of the back of 
> her
> neck. The pain is constant - everyday. Better in the morning and getting
> worse by evening. Mid-January she got a stiff neck so bad I had to follow
> her home from work to make sure she would be OK. The stiff neck went away,
> but the headache grew even worse. A friend of hers at a clinic asked her 
> to
> follow her fingers with her eyes and she could not do it. She did not even
> realize that she was not moving her eyes. By February it became so bad I
> took her to the ER. They ran blood tests, MRI and LP. Everything was
> 'normal' and the doctor suggested a neurologist because he did the 'follow
> my finger' thing and she told him she was even though it was clear to us
> that she was not. So we found a neurologist and he looked at her MRI and
> said there was nothing wrong with her and told her to come back in a month
> if she still felt bad. He gave her Valium and sent her on her way. Valium
> did not begin to help her headache, but she dealt with it the best she
> could. On March 8 she lost her peripheral vision. On the 9th she started
> having trouble swallowing, on the 10th she lost her facial muscles - she
> could not smile, stick out her tongue or suck on a straw. I took her to 
> the
> ER again and she was having difficulty walking and her right eye was 
> getting
> droopy. They gave her Imatrex and she thought her head was going to
> explode - it had the opposite effect on her. By the next day she threw up
> for 8 hours, lost her ability to speak and had to write me notes to
> communicate. After about two hours she could not open her eyes at all. She
> was able to open her eyes and speak again about five hours later. She 
> still
> had her other symptoms that seemed to get worse as the day went on. She 
> was
> released from the hospital on the 15th with no diagnosis, even though they
> ran every test they could think of. She suffered for two days at home and 
> I
> took her back to the hospital again on the 17th. They put her in ICU for
> four days with more blood/urine tests, MRI, CAT, LP etc. They tested for
> myasthenia gravis, multiple sclerosis, guillian-barre, lyme's, 
> encephalitis
> and a ton of other things I can't pronounce - all results were negative.
> They released her on the 22nd because the insurance company said 'diagnose
> her or let her go'. Before she left she still had many tests that were
> pending. Her neurologist suggested she might be depressed. That really 
> upset
> her because she has other things to do than hang out in the hospital. Her
> hospital doctor said the neurologist was just at a loss as to the cause so
> he blamed it on her. A few days later the hospital doctor called and told
> her she had Rickettsia. She took the lab results to her PCP and he told 
> her
> no test for Rickettsia was ever done. Her endocrinologist said everything
> was normal and suggested yet another neurologist. We sent the MRI's to a
> neurosurgeon and said he found nothing out of the ordinary. Now we don't
> know who or what to believe. She can deal with any diagnosis, but not
> knowing is almost as hard to live with as her headache. It is not a
> migraine, tension, cluster etc. Her head gets so cold that she will wear a
> cap on a warm day. She has trouble walking almost every other day. Her 
> legs
> just won't work and sometimes she can't even feel them. We're running out 
> of
> ideas about where to turn for answers - no one with a degree in medicine 
> is
> managing her case. I have done a billions searches for these symptoms and
> even though she has a few, not one disease fits them all. If anyone knows
> how I can solve this please help. Thank you.
>
> 

On Thu, 5 Apr 2007 09:03:22 -0500, "M" <dont@touch.me> wrote:

>My fianc� got sick at the end of December 2005. We thought she had the flu. 
>After
>six days she started feeling better, but her headache got worse. She
>described it as feeling like cold water was running over her head as if she
>was in the shower, except the cold water was 'rivulets' of pain'. The pain
>went from her forehead, across her scalp down to the base of the back of her
>neck. The pain is constant - everyday. Better in the morning and getting
>worse by evening. Mid-January she got a stiff neck so bad I had to follow
>her home from work to make sure she would be OK. The stiff neck went away,
>but the headache grew even worse. A friend of hers at a clinic asked her to
>follow her fingers with her eyes and she could not do it. She did not even
>realize that she was not moving her eyes. By February it became so bad I
>took her to the ER. They ran blood tests, MRI and LP. Everything was
>'normal' and the doctor suggested a neurologist because he did the 'follow
>my finger' thing and she told him she was even though it was clear to us
>that she was not. So we found a neurologist and he looked at her MRI and
>said there was nothing wrong with her and told her to come back in a month
>if she still felt bad. He gave her Valium and sent her on her way. Valium
>did not begin to help her headache, but she dealt with it the best she
>could. On March 8 she lost her peripheral vision. On the 9th she started
>having trouble swallowing, on the 10th she lost her facial muscles - she
>could not smile, stick out her tongue or suck on a straw. I took her to the
>ER again and she was having difficulty walking and her right eye was getting
>droopy. They gave her Imatrex and she thought her head was going to
>explode - it had the opposite effect on her. By the next day she threw up
>for 8 hours, lost her ability to speak and had to write me notes to
>communicate. After about two hours she could not open her eyes at all. She
>was able to open her eyes and speak again about five hours later. She still
>had her other symptoms that seemed to get worse as the day went on. She was
>released from the hospital on the 15th with no diagnosis, even though they
>ran every test they could think of. She suffered for two days at home and I
>took her back to the hospital again on the 17th. They put her in ICU for
>four days with more blood/urine tests, MRI, CAT, LP etc. They tested for
>myasthenia gravis, multiple sclerosis, guillian-barre, lyme's, encephalitis
>and a ton of other things I can't pronounce - all results were negative.
>They released her on the 22nd because the insurance company said 'diagnose
>her or let her go'. Before she left she still had many tests that were
>pending. Her neurologist suggested she might be depressed. That really upset
>her because she has other things to do than hang out in the hospital. Her
>hospital doctor said the neurologist was just at a loss as to the cause so
>he blamed it on her. A few days later the hospital doctor called and told
>her she had Rickettsia. She took the lab results to her PCP and he told her
>no test for Rickettsia was ever done. Her endocrinologist said everything
>was normal and suggested yet another neurologist. We sent the MRI's to a
>neurosurgeon and said he found nothing out of the ordinary. Now we don't
>know who or what to believe. She can deal with any diagnosis, but not
>knowing is almost as hard to live with as her headache. It is not a
>migraine, tension, cluster etc. Her head gets so cold that she will wear a
>cap on a warm day. She has trouble walking almost every other day. Her legs
>just won't work and sometimes she can't even feel them. We're running out of
>ideas about where to turn for answers - no one with a degree in medicine is
>managing her case. I have done a billions searches for these symptoms and
>even though she has a few, not one disease fits them all. If anyone knows
>how I can solve this please help. Thank you.
>


That's a very sad story to read. It seems from your writings that she
has had testing for every possible disease and disorder known to
medical science. It is amazing that in some cases there is not a
solution. It seems beyond comprehension that in these times of
advanced technology an answer is elusive.
As I got to the end of your story I was left with two possibilities -
one you might not like to see, and the other, not very encouraging:
As you might be aware, eponymous disease are those diseases that are
named after the doctor who discovered it. There are actually quite a
few, and further, there are some that are named after the patient,
such as Lou Gehrigs, or the place it was founded, such as Lyme.
Whether your fianc� has one of these diseases is not the point but
rather to demonstrate that unknown diseases are discovered from
time-to-time. Even in ICU of a large hospital with a advanced lab
service, the doctors can only test for what is known. Certainly, there
are numerous diseases/conditions/disorders out there that are yet to
be discovered. Based upon this, I would urge you to forge ahead.
Locate a hematologist, an immunologist, specialists in neurology
(beyond the typical office visit neuro), etc. As Old Goat advised, get
the records and pour over them and have the specialists pour over
them. Not only is it possible that something could have been missed,
but there might be additional, possibly specialized tests that could
be conducted. As specialized as we think modern medicine is, it is
actually quite channeled and if an individual falls outside of a
channel they (the doc's) shrug their shoulders and say "next".
The second thought would be that your fianc� is suffering some sort of
psychophysiologic illness. I do wonder if the doctors who mentioned
depression were thinking down these lines. That is not to portray your
fianc� as a faker as to the patient these symptoms can be very real.
However, instead of stemming from physiological cause(s), they
originate in the mind. Knowing the history as you do, I would re-run
the entire process through your mind again and again trying to
determine if things always match up. Otherwise, you might consider
speaking with a psychiatrist to better understand the presentation of
these disorders.


In any event, I wish you the best in getting to the bottom of this.   

Well, actually the radiologist said she had an evolving hemorrhage on her 
pituitary, but the neurologist just blew it off. Everything I have 
researched says that micro or macro adenomas are an emergency situation that 
can be fixed by doing surgery through the nose. I forgot what it is 
procedure is called at the moment. She actually had an endocrinologist tell 
her she needs to drink more milk for the vitamin D! Why on Earth would these 
people blow off a statement made by a radiologist that obviously saw 
something? We are going to collect her records tomorrow and pour over them. 
We are both at our wits end, but I won't give up. It's obvious that the 
medical community does not have more than 15 minutes to spend on us per 
visit. We need an investigator and I guess that would be me at the moment. 
Sorry to sound so bitter...just need to vent. Thanks for listening.


"OldGoat" <oldgoatmail@ERdocsuckyahoo.com> wrote in message 
news:bVcRh.3580$WL4.1139@trnddc04...
> Dear M,
>
> Wow! When you started I was thinking muscular issues, since the neck was 
> involved as well. I don't honestly know whether to tell you to totally 
> write off the neurological stuff or not. There's so much involved, it's 
> hard to know where to begin, muchless end.
> You say several times that the pain is kind of icy cold. I know it's a 
> lame question, but I gotta ask anyhow, does heat, preferably moist heat, 
> give her any relief at all? Did you or her ever get a chance to actually 
> see any radiological (xray, MRI or CAT) reports? I'd get my hands on all 
> that and try and make sense of it. Everyone has spinal defects, but they 
> often overlook them as the cause of the pain because of that. If she got a 
> nerve impingement that showed up on any scans, the radiologist should have 
> called it, but the doctor may have given it a pass.
> I want to be sure and let you know I am just grasping at straws here, but 
> could she say it's comparable to a "slurpee brain freeze" type of pain? 
> That should be a slam dunk for a doc as I believe that's an esophogicial 
> reaction/reflex.
> Forgive my jumping all over the place, I'mjust writing as this stuff pops 
> in to my head. Don't be so fast to blow off the idea of depression 
> treatment. She's has to be feeling low after looking for an answer for two 
> years. I'd bet she sleeps like crap, so CFS is expected when you get 2 
> hours of busted up sleep a night, that's on a good night.
> In spite of the "who knows" Rickettsia diagnosis, did they run a course of 
> tetracycline through her to see if that helped? Couldn't hurt unless she's 
> got issues with the drug. Some of the symptoms point that way, but not 
> enough for a sure call. But on the other hand, the better in the morning 
> then going downhill throughout the day could very well be a spinal issue 
> and the trapping of a nerve, as we shrink from gravity throughout the day, 
> compressing disks.
> Take a nice slow run through her tests results. Something may pop out at 
> you. Rocky Mountain Spotted fever and Lyme could still be a possibility, 
> they are both pretty tough to diagnose on the first shot. You may want to 
> have them run bloodwork again for those two. Grill her good on having 
> picked up a tick someplace.
> I wish I could help more, but you may just end up doing diagnosis by 
> process of elimination, which is always the long way around. Any more info 
> is always helpful. Keep coming back in here. We have to do something to 
> nail this down to at least an educated guess. The sooner the better.
>
> Keep in touch--og
>
>
>
>
> "M" <dont@touch.me> wrote in message 
> news:m8KdnUSn6fjEn4jbnZ2dnUVZ_uuqnZ2d@gvtc.com...
>> My fianc� got sick at the end of December 2005. We thought she had the 
>> flu. After
>> six days she started feeling better, but her headache got worse. She
>> described it as feeling like cold water was running over her head as if 
>> she
>> was in the shower, except the cold water was 'rivulets' of pain'. The 
>> pain
>> went from her forehead, across her scalp down to the base of the back of 
>> her
>> neck. The pain is constant - everyday. Better in the morning and getting
>> worse by evening. Mid-January she got a stiff neck so bad I had to follow
>> her home from work to make sure she would be OK. The stiff neck went 
>> away,
>> but the headache grew even worse. A friend of hers at a clinic asked her 
>> to
>> follow her fingers with her eyes and she could not do it. She did not 
>> even
>> realize that she was not moving her eyes. By February it became so bad I
>> took her to the ER. They ran blood tests, MRI and LP. Everything was
>> 'normal' and the doctor suggested a neurologist because he did the 
>> 'follow
>> my finger' thing and she told him she was even though it was clear to us
>> that she was not. So we found a neurologist and he looked at her MRI and
>> said there was nothing wrong with her and told her to come back in a 
>> month
>> if she still felt bad. He gave her Valium and sent her on her way. Valium
>> did not begin to help her headache, but she dealt with it the best she
>> could. On March 8 she lost her peripheral vision. On the 9th she started
>> having trouble swallowing, on the 10th she lost her facial muscles - she
>> could not smile, stick out her tongue or suck on a straw. I took her to 
>> the
>> ER again and she was having difficulty walking and her right eye was 
>> getting
>> droopy. They gave her Imatrex and she thought her head was going to
>> explode - it had the opposite effect on her. By the next day she threw up
>> for 8 hours, lost her ability to speak and had to write me notes to
>> communicate. After about two hours she could not open her eyes at all. 
>> She
>> was able to open her eyes and speak again about five hours later. She 
>> still
>> had her other symptoms that seemed to get worse as the day went on. She 
>> was
>> released from the hospital on the 15th with no diagnosis, even though 
>> they
>> ran every test they could think of. She suffered for two days at home and 
>> I
>> took her back to the hospital again on the 17th. They put her in ICU for
>> four days with more blood/urine tests, MRI, CAT, LP etc. They tested for
>> myasthenia gravis, multiple sclerosis, guillian-barre, lyme's, 
>> encephalitis
>> and a ton of other things I can't pronounce - all results were negative.
>> They released her on the 22nd because the insurance company said 
>> 'diagnose
>> her or let her go'. Before she left she still had many tests that were
>> pending. Her neurologist suggested she might be depressed. That really 
>> upset
>> her because she has other things to do than hang out in the hospital. Her
>> hospital doctor said the neurologist was just at a loss as to the cause 
>> so
>> he blamed it on her. A few days later the hospital doctor called and told
>> her she had Rickettsia. She took the lab results to her PCP and he told 
>> her
>> no test for Rickettsia was ever done. Her endocrinologist said everything
>> was normal and suggested yet another neurologist. We sent the MRI's to a
>> neurosurgeon and said he found nothing out of the ordinary. Now we don't
>> know who or what to believe. She can deal with any diagnosis, but not
>> knowing is almost as hard to live with as her headache. It is not a
>> migraine, tension, cluster etc. Her head gets so cold that she will wear 
>> a
>> cap on a warm day. She has trouble walking almost every other day. Her 
>> legs
>> just won't work and sometimes she can't even feel them. We're running out 
>> of
>> ideas about where to turn for answers - no one with a degree in medicine 
>> is
>> managing her case. I have done a billions searches for these symptoms and
>> even though she has a few, not one disease fits them all. If anyone knows
>> how I can solve this please help. Thank you.
>>
>>
>
> 

I'm surprised nobody has mentioned this:

Have you been to a world class facility (eg: Mayo)?

Maybe you need to go there, if possible

Mel
"M" <dont@touch.me> wrote in message 
news:m8KdnUSn6fjEn4jbnZ2dnUVZ_uuqnZ2d@gvtc.com...
> My fianc� got sick at the end of December 2005. We thought she had the 
> flu. After
> six days she started feeling better, but her headache got worse. She
> described it as feeling like cold water was running over her head as if 
> she
> was in the shower, except the cold water was 'rivulets' of pain'. The pain
> went from her forehead, across her scalp down to the base of the back of 
> her
> neck. The pain is constant - everyday. Better in the morning and getting
> worse by evening. Mid-January she got a stiff neck so bad I had to follow
> her home from work to make sure she would be OK. The stiff neck went away,
> but the headache grew even worse. A friend of hers at a clinic asked her 
> to
> follow her fingers with her eyes and she could not do it. She did not even
> realize that she was not moving her eyes. By February it became so bad I
> took her to the ER. They ran blood tests, MRI and LP. Everything was
> 'normal' and the doctor suggested a neurologist because he did the 'follow
> my finger' thing and she told him she was even though it was clear to us
> that she was not. So we found a neurologist and he looked at her MRI and
> said there was nothing wrong with her and told her to come back in a month
> if she still felt bad. He gave her Valium and sent her on her way. Valium
> did not begin to help her headache, but she dealt with it the best she
> could. On March 8 she lost her peripheral vision. On the 9th she started
> having trouble swallowing, on the 10th she lost her facial muscles - she
> could not smile, stick out her tongue or suck on a straw. I took her to 
> the
> ER again and she was having difficulty walking and her right eye was 
> getting
> droopy. They gave her Imatrex and she thought her head was going to
> explode - it had the opposite effect on her. By the next day she threw up
> for 8 hours, lost her ability to speak and had to write me notes to
> communicate. After about two hours she could not open her eyes at all. She
> was able to open her eyes and speak again about five hours later. She 
> still
> had her other symptoms that seemed to get worse as the day went on. She 
> was
> released from the hospital on the 15th with no diagnosis, even though they
> ran every test they could think of. She suffered for two days at home and 
> I
> took her back to the hospital again on the 17th. They put her in ICU for
> four days with more blood/urine tests, MRI, CAT, LP etc. They tested for
> myasthenia gravis, multiple sclerosis, guillian-barre, lyme's, 
> encephalitis
> and a ton of other things I can't pronounce - all results were negative.
> They released her on the 22nd because the insurance company said 'diagnose
> her or let her go'. Before she left she still had many tests that were
> pending. Her neurologist suggested she might be depressed. That really 
> upset
> her because she has other things to do than hang out in the hospital. Her
> hospital doctor said the neurologist was just at a loss as to the cause so
> he blamed it on her. A few days later the hospital doctor called and told
> her she had Rickettsia. She took the lab results to her PCP and he told 
> her
> no test for Rickettsia was ever done. Her endocrinologist said everything
> was normal and suggested yet another neurologist. We sent the MRI's to a
> neurosurgeon and said he found nothing out of the ordinary. Now we don't
> know who or what to believe. She can deal with any diagnosis, but not
> knowing is almost as hard to live with as her headache. It is not a
> migraine, tension, cluster etc. Her head gets so cold that she will wear a
> cap on a warm day. She has trouble walking almost every other day. Her 
> legs
> just won't work and sometimes she can't even feel them. We're running out 
> of
> ideas about where to turn for answers - no one with a degree in medicine 
> is
> managing her case. I have done a billions searches for these symptoms and
> even though she has a few, not one disease fits them all. If anyone knows
> how I can solve this please help. Thank you.
>
> 

I was just thinking that, Mel.

You may want to look into a medical university and/or a famous 
place....Stanford, UCSF, Mayo, Johns Hopkins, Columbia....

On my first brain tumor, i got to feel like a billiard ball, tossed around 
with no specific answers.  then i went to Stanford.

They've not been able to do diddly with my pain, but they unraveled the 
puzzle that was me in '84.

Get thee to a medical university!!!!

deep peace,
Lavon


"MZB" <moo@noway.prudigy.net> wrote in message 
news:C6gRh.358$YO6.317@newsfe04.lga...
> I'm surprised nobody has mentioned this:
>
> Have you been to a world class facility (eg: Mayo)?
>
> Maybe you need to go there, if possible
>
> Mel
> "M" <dont@touch.me> wrote in message 
> news:m8KdnUSn6fjEn4jbnZ2dnUVZ_uuqnZ2d@gvtc.com...
>> My fianc� got sick at the end of December 2005. We thought she had the 
>> flu. After
>> six days she started feeling better, but her headache got worse. She
>> described it as feeling like cold water was running over her head as if 
>> she
>> was in the shower, except the cold water was 'rivulets' of pain'. The 
>> pain
>> went from her forehead, across her scalp down to the base of the back of 
>> her
>> neck. The pain is constant - everyday. Better in the morning and getting
>> worse by evening. Mid-January she got a stiff neck so bad I had to follow
>> her home from work to make sure she would be OK. The stiff neck went 
>> away,
>> but the headache grew even worse. A friend of hers at a clinic asked her 
>> to
>> follow her fingers with her eyes and she could not do it. She did not 
>> even
>> realize that she was not moving her eyes. By February it became so bad I
>> took her to the ER. They ran blood tests, MRI and LP. Everything was
>> 'normal' and the doctor suggested a neurologist because he did the 
>> 'follow
>> my finger' thing and she told him she was even though it was clear to us
>> that she was not. So we found a neurologist and he looked at her MRI and
>> said there was nothing wrong with her and told her to come back in a 
>> month
>> if she still felt bad. He gave her Valium and sent her on her way. Valium
>> did not begin to help her headache, but she dealt with it the best she
>> could. On March 8 she lost her peripheral vision. On the 9th she started
>> having trouble swallowing, on the 10th she lost her facial muscles - she
>> could not smile, stick out her tongue or suck on a straw. I took her to 
>> the
>> ER again and she was having difficulty walking and her right eye was 
>> getting
>> droopy. They gave her Imatrex and she thought her head was going to
>> explode - it had the opposite effect on her. By the next day she threw up
>> for 8 hours, lost her ability to speak and had to write me notes to
>> communicate. After about two hours she could not open her eyes at all. 
>> She
>> was able to open her eyes and speak again about five hours later. She 
>> still
>> had her other symptoms that seemed to get worse as the day went on. She 
>> was
>> released from the hospital on the 15th with no diagnosis, even though 
>> they
>> ran every test they could think of. She suffered for two days at home and 
>> I
>> took her back to the hospital again on the 17th. They put her in ICU for
>> four days with more blood/urine tests, MRI, CAT, LP etc. They tested for
>> myasthenia gravis, multiple sclerosis, guillian-barre, lyme's, 
>> encephalitis
>> and a ton of other things I can't pronounce - all results were negative.
>> They released her on the 22nd because the insurance company said 
>> 'diagnose
>> her or let her go'. Before she left she still had many tests that were
>> pending. Her neurologist suggested she might be depressed. That really 
>> upset
>> her because she has other things to do than hang out in the hospital. Her
>> hospital doctor said the neurologist was just at a loss as to the cause 
>> so
>> he blamed it on her. A few days later the hospital doctor called and told
>> her she had Rickettsia. She took the lab results to her PCP and he told 
>> her
>> no test for Rickettsia was ever done. Her endocrinologist said everything
>> was normal and suggested yet another neurologist. We sent the MRI's to a
>> neurosurgeon and said he found nothing out of the ordinary. Now we don't
>> know who or what to believe. She can deal with any diagnosis, but not
>> knowing is almost as hard to live with as her headache. It is not a
>> migraine, tension, cluster etc. Her head gets so cold that she will wear 
>> a
>> cap on a warm day. She has trouble walking almost every other day. Her 
>> legs
>> just won't work and sometimes she can't even feel them. We're running out 
>> of
>> ideas about where to turn for answers - no one with a degree in medicine 
>> is
>> managing her case. I have done a billions searches for these symptoms and
>> even though she has a few, not one disease fits them all. If anyone knows
>> how I can solve this please help. Thank you.
>>
>>
>
>